Temper tantrums and trachs

Dealing with the terrible twos times two is challenging enough but now Brody has discovered how to yank his Trach out during a fit if rage! I don't want to go to bed...yank! Ladies and gentlemen we have entered a whole new phase of living with medically challenged children... This is now something I need to consider EVERYWHERE we go! This is NOT a scene I need to be dealing with at the grocery store or in the middle of Bloomingdales! Please be kind to mommy Brody!

Mommys score of saving Brodys life... Probably close to 10!

Pics

Mummer or pimp?


Reading by himself before bed


Cruisin





Stomach virus 😷


Watching Thomas.


Sleepy


Brody's on the wedding diet too


Rockin my camo vest and teddy backpack


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Pics

Hello handsome!



I like broccoli!

What what?!


Night out!





Snow!

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Second Annual Due Date

It's been over 2 years since my traumatic preterm birth and even more traumatic aftermath and it just doesn't get any easier. Today would have been the boys due date-when they should have arrived. Today should have been their birthday. I thought as the years went on and they grew older and bigger that feeling of loss would go away but I still have a hole in my heart for the beginnings they deserved but didn't get to experience. I feel that same sense of loss for the beautiful, celebratory experience of being pregnant and the overwhelming joy that comes with delivering a happy, healthy child. I feel sorry for my kids that they have to hibernate all winter and that they can't go to birthday parties or day care. My heart aches for Brody as I watch him grow old enough to start to notice there is something different about him... I can see that he doesn't understand why he can't talk when he tries so hard?!

I am very grateful for their accomplishments and thankful for their overall health but these feelings of being "different" will always be there. I could not love more or feel more pride in my awesome little dudes, they are my best buds, but with such deep love also comes the agony of watching my children encounter huge challenges in life at such an early age. I wish their lives were easier. I wish they were healthier. I wish them less discomfort. I wish for their obstacles to become fewer as time passes.

I hope that as the years go on January 11 no longer represents a loss deep in my soul but its jusy another day on the calendar. For now, I'll have a rough night of unsettled emotions and then tomorrow I'll wake up and be Mom again.

Norovirus

Wow what a week! Brett and I were soooo sick earlier this week and are still making a very slow recovery. Brody has somehow escaped it as his nurses have been keeping him as far away from us as possible. Poor Cameron has not been able to keep anything down or in from either end since Monday! He didn't have an ounce to spare before this, now he's back to his little skeleton frame. He cant afford to get sick because he is so super sensitive that it throws off his already poor eating and sleeping. I changed his bedding 3 times just last night! The amount of laundry and bleaching going on in this house is obscene.

Winters are really really hard on my guys- they pick up bugs so much easier and don't have the strong immune systems that other kids their age have to fight it off in normal time. Then our focus becomes hydration and comfort and weight gain and development take a back burner. It's a vicious cycle but a HUGE contributor to their setbacks.

I have a ton of cute videos and pics I will try to upload in between laundry loads

Bronch results

Copier from a text brett put together. Im too busy to writr in more detail but heres he gist...

things pretty much look the same as before but considering he currently has a cold there is a probability that things might be a little better than they appear once that cold calms down...that said we are starting a new antibiotic therapy that has shown promising results for airway reconstruction patients in reducing inflammation (completely off label application).... he will be scoped again in march to see if it is working....if things look good in march reconstruction could be in late april may june. That would be a best case scenario if he reacts well to the antibiotic


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Waiting

Waiting to go back to the OR. Brody has been so tolerant this time with all the poking and prodding... He's really growing up!


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With this bronch be "the one"?!

No time to write but Brody goes back into the OR for another bronch tomorrow. Think happy thoughts, think happy thoughts.


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